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leiomyosarcoma

ma
Posts: 6
Joined: Dec 2009

hi yall, my name is kay. i was just diagnosed in november with lms. i am so scared from everything i read about it. would appreciate a note back. would like to know how fast it comes back if it does or maybe how long you have survived. also does anybody know anything about the md anderson clinic in houston??????? or the name of a lms specialist there?????? thanks!!!!!!!

catbird
Posts: 33
Joined: Sep 2009

i would go to md anderson - they have a sarcoma center & you can do a consult for a doctor nearer you if you are unable to stay in houston for treatment. i know someone there with another type of sarcoma.

i have lms found out in 8/2009 currently working with tx oncology for chemo treatment which is a similar treatment at this point as "mda". will do a consult there when i have negative "changes".

where was your lms?

2taikomom
Posts: 5
Joined: Dec 2009

Hi Kay,

I urge you join the ACOR LMS online support group list. That is where hundreds of LMS families have received invaluable information on LMS treatments, doctors, clinical trials, research and of course, support. After you join, introduce yourself and others with the same type of LMS will answer your questions.

You can join here: ACOR L-M-Sarcoma
http://listserv.acor.org/archives/l-m-sarcoma.html
If you have trouble getting on, contact me.

We also have very helpful resources on the Leiomyosarcoma Direct Research Foundation site: http://www.lmsdr.org/support.php
Look specifically at the links on that page, " LMS Information" and "Research Links."

Last, we always recommend getting a consultation or 2nd opinion at a MAJOR SARCOMA CENTER.
There are only a few in the US: http://www.lmsdr.org/centers.php

Sending Hugs,

Sharon Anderson, MSW
8 yr. stage IV, ULMS survivor,
Executive Director, LMSarcoma Direct Research Foundation www.LMSdr.org
.... Working not Wishing ......

...............................................................

catbird
Posts: 33
Joined: Sep 2009

i will join up too as this is such a rare cancer & i find little help on the web

thanks for the info sharon!!!

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